Doctor Recommendations for Chronic active Epstein–Barr virus (CAEBV)

Clay - I do not have that information at hand, nor am I in a place to look it up.
Here is one recent article I managed to find for you:
https://onlinelibrary.wiley.com/doi/full/10.1111/ijlh.13199
Sue

Can anyone recommend a specialist how treats Epstein Barr Virus near Pittsburgh, Pa? My 23 year old son was just diagnosed with EBV and has had a sore throat now for over 4 months. Tx!

There are no doctors in Arizona, including infectious disease doctors, who treat EBV or CAEBV. There are functional doctors/natural paths that will take your life savings in an attempt to treat it and you will be right back at square one, just poorer. You can join stuffthatworks.org which is a CAEBV support group and all who travel and spend their money trying help from Natural Paths are now broke and still sick and some even sicker. OZONE therapy is a big one everyone seems to be trying and after $10K, 40 treatments, they are back in the same boat. It sucks and I am sorry that this is all a negative response, but the truth is the truth even if it is negative. I put my faith in Lord Jesus Christ to get me through and He has not let me down. He made sure I had all I need. Although we suffer it is all temporary. I am letting nature take its course and getting ready for heaven.

There is no treatment in the West for this disease. It is more prominent in Asia and they do HSCT stem cell transplants to kids who get EBV/Mono. Your son can get a transplant in Panama. My doctor referred me to Panama for help. Sorry to say it but your son has chronic EBV and will struggle with it for life. Every time his immune system is down he will get either mono, bronchitis, even pneumonia. Let's just pray it doesn't pretend to go dormant and turns into sCAEBV. That is what some of us have and what happens is you get over the mono finally and everything seems fine. It may be 10 years later even 20, but eventually, after it has hidden in organs etc, it decides to rage war with the immune system. It comes out of hiding and there is severe pain systemically, severe ice cold night sweats, anemia, bone and joint severe pain, heart palpitations and cardiac issues, lesions in lungs, spleen etc. Once CAEBV is diagnosed there is only a 13% chance of living another 50 months. only 20% of all stem cell transplants are successful and most die from complications from HSCT. Prayers for you and your son my friend.

Have you checked into the Infectious Disease Clinic at Mayo in Arizona?
http://mayocl.in/1mtmR63

Sue

Yes I have. There are 2 doctors witb Mayo that work with EBV patients and they are up in Minnesota, but there is no treatment for EBV/CAEBV so I am not sure why anyone would waste their time. My doctor told me there is no treatment and to see a psychiatrist for my symptoms. I still looked for a doctor to help me and she turned out to be correct. Also, I joined stuff thatworks.org and listened to the testimonials of several several people who have been to several natural paths, functional doctors and have spent their life savings only to be just as sick as when they started. So really even if there was an infectious disease doctor here in Arizona that took patients? It would do us absolutely and no good. But one can get a stem cell transplant in Panama

Hi- just curious who are the 2 doctors in Minnesota that specialize in EBV?

Do you have more information about stem cell transplants in Panama?
Thanks!

I am new to this forum which was found while I was doing a Google search. I apparently have Chronic Reactivated Epstein Barr that was discovered during findings of an apparent reactivated Lyme infection in January 2022. The Lyme was treated and the EBV was ignored by 2 Infectious Disease Specialists, 2 PCPs, and 1 Concussion Specialists (*I suffered two separate concussions in 2019 and 2020 and developed severe fatigue with debilitating pains and reduced mobility following the 2020 concussion). I just re-reviewed my labs from 2020 and 2022 and guess what, my EBV levels were greater than 600 and 700 along with extremely high inflammatory markers. At this point in time, I was treated for the Lyme with IV antibiotics and felt really good for 4 months. I then did alternative treatments and protocols through with a functional medicine doc and they didn't get alerted by my labs showing elevated EBV but stayed focused on Lyme and the protocols unfortunately made the EBV symptoms significantly worse through 2023. I am now having to piece meal a protocol together to help myself and need help because I am no longer trusting the practitioners I have used and don't feel like continuing to be a guinea pig. I live in PA. Are there any RELIABLE practitioners that are just taking your money and haphazardly trialing and erroring with this and that, that can truly help. Of note, I just established care with a PCP who I thought by his bio had alternative health experience and when I showed him my labs he said nothing--offered ZERO input on the EBV other than, most of the population has it. From my research now, EBV is an oncogenic and is responsible for many cancers and other chronic health conditions. All I see on this forum is the lack of hope of getting the right care and the constant struggle to "prove" you are challenged significantly with this virus without enough support to guide you through and without wanting to be realistic with the costs that someone dealing with this should have to pay to get well. Thanks for any feedback and guidance.